Getting Access To Your Own Data Sounds Like A Good Idea, But So Far It Hasn't Been Easy

from the trials-and-tribulations dept

Living in the age of data – whether big or small – certainly has its benefits for businesses and governments. Consumers, however, might be excused for feeling like they are being carried along without fully understanding what is happening to their information. Projects are already up and running to find the right formula to empower citizens without putting them at risk, but each has its own problems.

Companies can carry out detailed analyses of customer data to find new revenue streams while planners can look at how to reduce energy consumption in smart cities based on usage data.

But the individuals who generated the data in the first place are excluded from the equation when it is used. Several government schemes around the world – including the UK’s midata – are trying to change that. The aim is to empower consumers to take advantage of the wealth of data companies and governments harness about them by giving them access to it too. But feedback from early attempts to do this indicates that it might not be an easy endeavor.

Blue and Green buttons in the US

In 2011, the US government established the Smart Disclosure program which is driving the release of both public and private sector data in a standardized, machine readable format. According to President Barack Obama, this will help the public make better choices about all sorts of services such as healthcare, finance and energy.

One of the projects underway as part of Smart Disclosure is Green Button. This is an initiative that allows customers to download their personal energy data in a standard, electronic and portable format. They can then use apps to help them manage their energy consumption, and, ultimately, lower their bills. Currently, 27 million households in seventeen US states have access to their own energy information.

American consumers can also click on the Blue Button, a public-private initiative to give patients access to their health data electronically. Through the Blue Button, users can start compiling their personal medical history, check if the information is correct and have it ready in case of emergency, or when switching health insurance companies. They can also plug their own health information into apps and tools to help them set personalized health goals.

The Blue Button, however, is where the problems with Smart Disclosure come to light. It has been suggested that the Blue Button is essentially useless because the formatting of the data is often unreadable. With this in mind, the government is revamping the system and plans to relaunch the Blue Button in 2014.

The Green Button has also been criticized, with some users being perplexed with the amount of personal data on offer and how to use it. Ted Eytan, a blogger from Washington, DC, writes that he was baffled by the number of apps on offer and found that many were unfinished and others didn't work. He was also concerned that he had to provide information that he did not want to give just to review his energy data.

The success of the Blue and Green Button initiatives is crucial for the whole Smart Disclosure program as many more initiatives are planned under it. For example, MyData aims to provide students with access to their education and financial aid data so that they can create a personal learning profile and use tools to generate learning recommendations based on their past performance and future goals.

Other planned programs include both government data such as military training and experience records from the Department of Defense and historical financial history of citizens, such as earnings and income, from the Internal Revenue Service.

Thinking first in France

With its aim to “return personal data to individuals,” France has also joined the UK and US in a similar initiative called MesInfos.

Created by the FING think tank, the project is embarking on a year-long pilot phase to determine how individuals will use their personal data and how they can benefit from it. During the so called “experimentation period”, a range of different datasets from the private sector will be made available to testers to explore the opportunities for new applications and services.

During this pilot, MesInfos will be looking at whether data transparency is worth the risks involved in sharing information in this way and what to do if “new opportunities for abuse emerge”. The plan is also to think about policy issues such as whether data handback should be mandatory and more fundamental questions like if individuals even want their data at all.

So far, they seem to. More than a million users have registered for the Blue Button to access and download their personal health data. There also seems to be interest from industry, with more than 30 utility and energy providers representing about a quarter of all US customers implementing or planning to implement the Green Button.

But it is ultimately consumers who will determine if such initiatives are going to be successful. Some users are wary of the privacy and security issues involved in initiatives such as midata in the UK, MesInfos in France and Smart Disclosure in the US. As one blogger puts it: “if disclosure is smart, not everything will be disclosed”.

Derek McAuley is Professor of Digital Economy at University of Nottingham. He receives funding from RCUK, and is CIO in residence at the Connected Digital Economy Catapult.

Georgi Kantchev is a PhD student at Oxford. He does not work for, consult to, own shares in or receive funding from any company or organization that would benefit from this article, and has no relevant affiliations.

But wait...

How exactly does Blue Button aggregate my PHI? I was not under the impression that any centralized system (the government) had at will access to this data. Hell, my current physician (about 2 years) only knows what I have told her.

This is bad .. If they want to keep my data not that i really have a choice ,keep it locked up and encrypted .. make or build a downloadable program that lets me extract in a reviewable format ..and re-encrypt with my own personal encryption /password .. or use a vault/locker that only i can access with my personal pin and card/id..you know like a bank

Re: But wait...

Following the fine link in the article, to http://www.healthit.gov/bluebuttonit says "In 2014, a new tool will be available to help you find out which providers, health plans, and others offer Blue Button—a way to access your health information electronically. You’ll be able to get started compiling your medical history so you’ll have the key information you need at your fingertips. In the meantime, you can ask your health care providers or health insurance company if they offer you the ability to view online, download, and share your health information via Blue Button, or look for the Blue Button logo."And there's a Learn More at the link. Basically it is intended to be a standard format allowing a person to aggregate lab test results, prescriptn records, drs appt history from (ultimately) any provider and to add their own info.

It looks like a worthwhile endeavor. Yes, security, privacy, yada yada, but helpful in taming mountains of paperwork and keeping a coherent medical history.

Re: But wait...

Re: Re: But wait...

Well, thank you for digging into that, Sir.That answer is much less unsettling than an organization aggregating my health info independently. It appears to be not much more than a platform for use by those who CHOOSE to use it, which is very different than what I imagined.